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Len TillemParticipant
Has the Luspatercept been a benefit for you?
Also, my doctor does not feel writing to Medicare will help get Medicare to pay for this treatment.
Does Medicare even consider a doc accompanying letter with the prescription?Len TillemParticipantI have MDS with no ringed side blasts. I’ve had over 70 transfusions.
I stopped Decitabine with Dr approval after 15 treatments, mainly due to Covid 19.
I get a transfusion every 10-14 days.
My Dr. just prescribed Luspatercept.
Since I don’t have ringed side beats i assume Medic-Care will say no.
Does anyone know the cost of this drug if you have to pay for it out of pocket?
Both my local oncologist and the MDS specialist oncologist I see at UCSF think I should do this new drug.
What do I have to lose?Len TillemParticipantHello,
I have MDS. Ive been on Decidabine for about 14 treatments, one every 6 weeks.
I was on Aranesp until I switched over to Retacrit 10 months ago due to cost.
My neutrophils have been 0.2 to 0.1 fro over a year.
No hospitalizations for infections yet.
No itching.
I’m not even sure the Retacrit does me any good. Neither is my oncologist.
I’ve had over 60 transfusions.
I am now looking into a chimeric transplant (?) at UCSF where I see a MDS specialist once every 6 weeks.
I’d be happy to talk to you further if you wish.Len TillemParticipantI’ve had MDS for over 5 years now.
Next week I start Decitabine 3x a week every 28 days.
My oncologists, one here in Napa and one at UCSF,(the super blood disease specialist), told me to get the Shingrix vaccine. Since my immune system is compromised, I get Neupogen 2 or 3x a week, I am vulnerable to a Shingles attack.
I got the first Shingrix vaccine 2 moons ago. No problems. -
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